CLAIRE'S STORY

It was January 7, 2017 when the pregnancy test showed positive. We were going to have our second child. Silas was almost 9 months old and we were excited to give him a sibling close in age. The pregnancy had some bumps in the road, but for all we knew things were on track as far as our baby’s development. We did genetic testing which came back normal. It was during this time we discovered we were having a girl. Her name would be Claire Elizabeth. Nursery plans were in place and we were overjoyed with our new addition. We ordered the perfect crib and changing table along with the perfect decor. We were intentional in praying for this little girl and could not wait to meet her.

At 20 weeks pregnant, we went for our anatomy scan ultrasound knowing it would be quick and easy. We had no idea that May 9th would change our lives forever. It was on this day that we found out about Claire’s heart defect. The next two days we had two more ultrasounds and saw two different doctors trying to figure out what was going on with our little girl. Our heads were spinning to say the least. There was no definitive diagnosis at this time, but we knew it was bad. The next 17 weeks were riddled with doctors appointments, trips to UK Children’s Hospital, Cincinnati Children’s Hospital, and our church for counseling.

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At 33 weeks pregnant, the doctors decided to conduct both a fetal MRI and amniocentesis. We were given the diagnosis of CHARGE syndrome for Claire. Our hearts sank with this news. We consulted with a panel of physicians at Cincinnati Children’s Hospital and with UK Children’s palliative care team to determine the plan of action to take with Claire. Would her life be defined by multiple surgeries and hospital stays to try to sustain life, or would we let her live as long as she could peaceful in our arms? As gut wrenching as it was, given the severity of her condition, we chose the latter.

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Claire Elizabeth Embry was born on September 7, 2017. She spent the majority of time in her mother’s arms. Claire was able to meet her big brother, Silas, and her grandparents. She was baptized and dedicated to our Heavenly Father hours before going to meet Him. Claire lived for 9 hours. Although her life on Earth was short, we believe her story has just begun. Thank you for joining us in this journey and partnering with the Claire Foundation, Inc.